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Tuesday, May 11, 2010

May 12th: ME/CFS Awareness Day

May 12th is International ME/CFS Awareness Day. Unless you have or know someone with ME/CFS, you probably wouldn't know that. And even if you did know, you probably won't read about it in any newspaper, nor hear about it on any media outlet. Like many ME/CFS patients themselves, this day tends to go by unmentioned, unnoticed, unheard.

So, in an effort to do my small part in raising awareness about this illness, here are just a few basic facts about ME/CFS:

1. ME stands for myalgic encephalomyelitis -- a complex,
multi-systemic illness affecting the immune, endocrine, cardiovascular,
autonomic and central nervous systems. It is classified by the World
Health Organization (WHO) as a neurological disease.

Unfortunately, ME is also often referred to as chronic fatigue
syndrome (CFS), a highly trivial-sounding name given to the disease by
the Centers for Disease Control (CDC) after one of the largest U.S.
outbreaks of the illness in Incline Village, NV in the 1980s. It is now
often abbreviated ME/CFS.

2.In order to be diagnosed with CFS in the U.S., you must present with:
extreme, incapacitating exhaustion that is not alleviated by rest and
reduces your activity level by at least 50% as well as at least four of
the following symptoms: post-exertional malaise (a worsening of symptoms
after even minor exertion) lasting more than 24 hours, muscle and joint
pain, swollen lymph nodes, sore throat, low grade fevers, headaches,
unrefreshing sleep, and memory problems/difficulty concentrating. These
symptoms must be present for six months or longer. This set of
diagnostic criteria for CFS is referred to as the 1994 CDC Fukuda
definition of CFS.

Many patients also suffer from severe neurological problems, sensory
overload, orthostatic intolerance, exercise intolerance, shortness of
breath, chest pain and many other symptoms.

In 2011, a new international definition of M.E., the International Consensus Criteria, was established by doctors and specialists from around the globe and published in the Journal of Internal Medicine. It is yet to be known if/when the CDC will officially adopt it.

3. Studies have shown ME/CFS can be as or more debilitating than
multiple sclerosis, lupus, COPD, heart failure, late-stage AIDS and
end-stage renal failure.

Dr. Nancy Klimas, an immunologist who splits her time between ME/CFS and HIV/AIDS patients, was recently quoted as saying:

"I can tell you, if I had to choose between the two illnesses (in 2009) I would rather have H.I.V."

4. ME/CFS afflicts both genders and all age groups, including young
children. Approximately one million Americans have ME/CFS. That's more
than the prevalence of breast cancer, AIDS, or lung cancer combined. Additionally, at least 17 million people suffer from ME/CFS world-wide.

5. It has been estimated that about 25% of ME/CFS patients are fully disabled, and many of those are bedridden or completely homebound.

6. ME/CFS often has a viral and sudden onset. Many viruses have been
linked to CFS, including EBV (mononucleosis), CMV and HHV-6. Bacterial
infections have also been associated with the disease, including
mycoplasma, Q Fever and Lyme disease.

8. A February 2011 PLoS ONE study
showed that people with CFS have unique cerebrospinal fluid proteins
found only in CFS and not in healthy controls. The proteins in CFS also
can be differentiated from those with Lyme disease. As an example, the
study states that "the CDK5 signaling pathway was found to be
significantly enriched for proteins identified only in the pooled CFS
proteome. This signaling pathway has been linked to Parkinson's and
Alzheimer's diseases."

9. In October 2011, a groundbreaking Norwegian study was published
showing 2/3rds of ME/CFS patients experienced significant improvement
in symptoms using a chemotherapy drug called Rituximab. Rituximab
"destroys both normal and malignant B cells
that have CD20 on their surfaces, and is therefore used to treat
diseases which are characterized by having too many B cells, overactive B
cells or dysfunctional B cells." The fact that this drug appears to
work in ME/CFS suggests that the illness may be a type of auto immune
disease. For more information, check out this excellent summary.

10. ME/CFS is thought to cost the U.S. economy about $25 billion a year,
and perhaps more. The average cost per family of a ME/CFS patient is
approximately $25,000 per year (including unemployment). Yet, despite
its prevalence and seriousness, ME/CFS is still one of the least funded
of all illnesses in the United States (in the bottom 12). More money is
spent each year studying hay fever than ME/CFS.

11. Currently, there are no FDA approved treatments for ME/CFS and there is no cure.

Updated: September 2012

Some things you can do to help:

1. Help spread the word that ME/CFS is a serious and multi-systemic disease. If someone has false misconceptions about the illness, speak up and correct them.

2. Don't call CFS "chronic fatigue." CFS is a complex illness affecting many different organ systems; it is not a single symptom. Referring to it merely as "chronic fatigue" (rather than CFS or ME/CFS) is not only incorrect, it can actually feel disrespectful.

3. If you know someone with ME/CFS, let them know you care. Drop them a line from time to time (without expecting a response). Listen to what they have to say and ask if there's anything you can do to help.

4. Become educated and involved. Read up on ME/CFS from legitimate sources and stay informed. Join advocacy groups such as the ones linked on this page, sign petitions, watch online webinars, and/or write to Congress to request more funding and awareness.

5. Wear a blue ribbon to show your support. If you are on Facebook, consider putting this twibbon(or this twibbon) on your profile picture to help raise awareness.

6. As noted above, ME/CFS is one of the least funded of all illnesses. If you can afford to, make a donation to one of the many ME/CFS charities. If you are unable to donate, you can instead write to your local senators and representatives and ask that they allocate more funds toward ME/CFS research.

7. Below are a few informational videos about ME/CFS. Take a look, listen and pass them on.

SolveCFS Video

Sleepydust Video

May is also Lyme Disease Awareness Month. To learn more about how this co-existing infection may be complicating my personal case of ME/CFS, please read my previous post titled A Note on Lyme Disease.

Thank you.

Permission is given to anyone who wishes to re-post or link to this page.

fantastic post Laurel. Hope you don't mind I have linked it on my face book page & would like to use it to help me put together some info I can pass out to friends & family. I find it hard to explain it all myself & most sites etc are too long & complicated. Yours is nice & easy to read & well written thank you x

Thanks, Toni. Yes, anyone who would like to link or repost this is welcome to... thank you for doing so! I added a sentence at the end of the page in the event anyone else would like to link it. Hope you are doing as well as can be!

Laurel, you did such an excellent job of researching and writing this post. I noticed you offered to have people link to this post, so I have linked it to my blog for M.E./cfs awareness day. I hope you have a good day and thanks for such an eloquent post.

I'm not sure if you're able to check comments right now sweetie, but I found this post when looking for awareness week resources for this year, and as I'm not well enough to write a good awareness post this year, I was wondering whether it would be ok with you for me to repost this post on my blog, with a link back?

Don't worry at all if you're not able to reply ... or if you see this comment after the fact. I totally understand!

I think of you often Laurel - I hope you are feeling a little better than when we last spoke!

Thanks for helping to raise awareness. Please post any events on our Facebook page so it gets exposure world wide and hopefully inspires others to raise awareness too. Every little bit helps. See www.facebook.com/may12th.awareness.